Saturday, February 6, 2010

Buffalo CCSVI Study: Hints of Big News Coming Soon

As many of you who have been following the CCSVI saga are aware, the University at Buffalo has been conducting an imaging trial to study whether or not there is correlation between Multiple Sclerosis and the vascular abnormalities described in the CCSVI theory. For those who are unaware of CCSVI, you can click for more info here.

The center conducting the study, the Buffalo Neuroimaging Analysis Center (BNAC) has just released a newsletter (click here for newsletter) that, without stating the actual study results, gives strong indications that those results will be extremely positive. To quote the newsletter:

"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI. We are planning a press release by mid-February, as well as submission of these findings to the American Academy of Neurology annual conference as late breaking news"

As a result of these findings, to BNAC has undertaken the following initiatives:

A second phase of the study, which will include 500 patients to be imaged using a special Doppler machine developed specifically for CCSVI (click here for more info).

The center will offer, for a patient paid fee, comprehensive CCSVI venous diagnostic testing. Testing will be offered to price levels, a CORE package for $4500, and an ADVANCED package for $6000. The center is also undertaking negotiations with insurance companies to try to get them to cover the cost of this testing, but doesn't expect any company to cover such testing for at least 18 months. (click here for more info).

A 30 patient, six-month study that will determine the safety and efficacy of therapeutic angioplasty (click here for more info).

A future double blinded study of a brand-new therapeutic procedure, which differs from that used by either Dr. Zamboni or Dr. Dake at Stanford University.

Certainly, these initiatives would not be undertaken if the soon-to-be released trial results were disappointing. The results are scheduled to be released sometime in mid-February.

As I have stated before, I'm cautiously skeptical but very optimistic that CCSVI will prove to be a major advance in our understanding of the mystery we now call Multiple Sclerosis. I'm not sure that it will explain all cases of MS, but I do believe that exploring the idea of a vascular component to MS has the very real potential to fundamentally change our basic perceptions of the disease.

That said, it's important to keep in mind that the Buffalo study, no matter how positive the results, will only show correlation between vascular abnormalities and Multiple Sclerosis. It will not address the question of whether these vascular abnormalities are the cause or the effect of the MS disease process. While there is evidence to suggest that the blood flow abnormalities seen in CCSVI may in fact be the genesis of the disease, it is also still very possible that the mechanisms that damage nerve and brain tissue in MS also cause the vascular anomalies now being called CCSVI. Only time, and more research, will tell. Of course, many of us (myself included) do not have the luxury of time, and each patient will need to make their own judgments as to how to proceed, armed with whatever new knowledge the study results provide.

These are very exciting times in the world of MS research. It will be extremely interesting to watch the reaction of the US media and mainstream neurology to these findings. If the results are as positive as the above hints suggest, it will be difficult for the US media to continue to entirely ignore the CCSVI issue, and the reaction from the neurologic establishment will likely range from a welcome open-mindedness to cries of absolute "balderdash", depending on the ilk of individual physicians. I predict that we will hear criticism over the fact that many of the Buffalo study principles have in the past had close associations with Dr. Zamboni, a charge that will be rendered impotent as long as the study has been conducted in the proper blinded fashion, which I believe it has.

The excitement in the MS patient population will without question be off the charts, which is testament not only to the promise of CCSVI, but also to the frustrations many MS patients feel with the current state of MS care and treatment.

8 comments:

Here's a CTV story about the consensus document from an international meeting of vascular specialists who concluded, unanimously, that CCSVI is congenital. That means CCSVI causes MS not the other way around.

What do you mean right away? It does affect the cns EVENTUALLY and keep acting alike for the years to follow. Do you really think MS starts when diagnosed? I d say it starts many years before ,silently until it reaches the point that one cannot but start noticing that something is seriously wrong.And as far as it causes CCSVI it is the dummest thing i ve ever heard. People are missing veins, their bones are pinching them or whatever, how on earth an autoimmune disease could be responsible?The question is what percentage of ms patients have CCSVI. If it s close to 90% like Zamboni says, the next question should be: no stenosis, no MS. What then? Patients go misdiagnosed for years and years and hopefuly Zamboni's research will not only help ms patients but will poor some light in the ms BUCKET.

Right away like when newborn? Kids also are diagnosed with ms, adults, elders, whoever, whenever. Especially in stressful times, when trying to get the most out of life, 20-40s something that also correlates with the vascular pattern.There should be many people with ccsvi that will never be affected by ms since their blood vessels are tougher, their quality of life is better, they dont smoke bla bla bla bla...All i am trying to say is YES! It is unbelievable that the cause for MS has been obviously found. Can it be cured? We ll see.But let neutologists be sceptic. All others should be open minded, let the sun shine and believe people.Zamboni is not an idiot. Neither Buffalo is a small town university. Neither Haacke neither everyone who believes should be taken for a fool.And a piece of advice: read before talking.

I did a little definition checking and found that "congenital", meaning "innate" or "present at birth" is NOT a synonym for "genetic". Researches have long thought there is a genetic component to MS, but it is not absolute. An identical twin with a sibling with MS, stands just a 30% chance of developing the disease. Were MS a genetic disease, that chance would be 100%.

It seems to me that if we all have some congenital abnormality leading to CCSVI, then there needs to be other environmental factors that come into play to trigger the start of the disease. The role that viruses such as Epstein Barr and Vitamen d deficienies play will hopefully come to light as this research progresses.

It is also fascinating that CCSVI research is starting to show that the placement and level of blockage / stenosis can be a predictor of the type and severity of the ms. These elements probably all factor in to the timing of when a person develops ms and whether or not a person actually develops ms at all (Marc, please forgive me if I am repeating something you mentioned in a previous post).

For me, I am just excited to get the first results from the Buffalo study. It's only up from here!

My sister had a congenital AVM - Arteriovenous malformation. It is a malformation where the vein and artery meet. It did not begin to cause neurological symptoms till she was in her early 40s although she had been having severe headaches for many years. Yes, venous malformations can take years before the damage is severe enough to show symptoms. I think CCSVI and MS is the medical breakthrough of the decade. But big pharma and neurologists will not be happy. Rough road ahead.......

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...